January 14, 2019
There’s been talk of me going home sometime in the next week or so. This, to me, is kind of out of the blue. The conversations with the doctor are not horribly consistent on this topic.
I’ve been on the IV antibiotics for the entire time I’ve been here. I’m starting to feel a little better. I am walking pretty well with a cane. I am able to get up and get to the bathroom without having to have someone hold my gait belt the whole time. We’re doing longer laps and walks around the hospital. I still get tired easily. I’m doing okay with the exercises and being able to manage in the shower without slipping. None of these activities are back to how I was before all of this started in January. Kind of depressing.
My left arm/hand has gone from being Michael J Fox hand to Swedish Chef hand to feeling closer to normal. After getting the TheraPutty and playing with it watching TV, I woke up the next morning with it feeling almost normal again. I am not feeling as spastic doing the neuro tests. My left side is getting stronger. We’re still doing a lot of work on balance and stairs. I’m having my orthostatic blood pressure tested every time I do PT. We need to ensure that I’m not going to fall over every time I get up from the bed or a chair. I just didn’t appreciate the test being done at 3am when I got up to go to the bathroom. Turns out, neither did the charge nurse.
The speech therapy still seems difficult. There are assignments that I thought I did well, but found out afterward that I completely messed them up. One is a worksheet figuring out a time card and work schedule. There is another that goes through a tasks list where I do things in forward and backward alpha order that is timed. I have a hard time switching tasks. These are tasks that would be similar to things I would normally do at work, and keeping track of my appointments and meds at home, so it’s important that I be successful.
I’m eating lunches and dinners almost every day now with other patients and one of the volunteers. There are some other family members around that will join us when they are here. I’ts nice to talk to outside people about something other than cancer and brain problems.
I sort of learned how to play Skip Bo with one of the other patients and his wife. We talked about getting together to play again after we both got home. I say “sort of” because (a) my brain doesn’t work like it’s supposed to, and (b) it’s hard to learn a game when the people you’re learning to play from are highly competitive with each other.
We “watched” the SuperBowl on the big screen in the dining room while playing Skip Bo, My patient friend and his wife aren’t football fans, which means we didn’t watch much of the game. None of us was particularly invested in the teams playing, so I didn’t miss it much.
I’m probably moving rooms. There is a guy who’s going home soon and I’m being told I’m moving to his room because it’s quieter. I’m a bit of a light sleeper and my room was right next to the nurse’s station, which is where everybody hangs out at break time and when some of the earlier risers start waking up around 5am. I’m still not a morning person so I don’t do this well.
Other than that, we’ve washed some of my clothes. I had them brought back from the dryer so I could fold them. I found that to be more difficult than I would have liked. I’ve never been a big fan of folding long-sleeved t-shirts, so when my brain isn’t processing how they or my jeans fold, it takes longer and is more frustrating than I remember.
I am eager to do well so I can go home to my own bed where it’s quiet and the blankets fit the bed. A place where I don’t have to wear non-skid socks that don’t fit to bed every night. I’m not as eager to find out how I’ll manage a shower in my tub. Nor am I as eager to go up and down the stairs at home, especially when I’m carrying things.
I’m hoping that my sister or my aunt can come out and help for a week. I feel like I’m asking a lot to have them come back and help again. Unlike when I had my brain surgery and felt fine, I feel like I need more help this time.
I have to know when I can go home before I can arrange any help, and I’m not getting anything like a definitive answer from the doctor or any of the therapists here, so we’ll just have to see how this plays out.